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For Quality of Life at the End of Life

$73,350 of $100,000 goal

Raised by 599 people in 5 months
Created February 13, 2019
Friends of Kathy, Kim and Greyson
on behalf of Kim Acquaviva
During the past few weeks, family, friends and colleagues have witnessed the courage, dignity, honesty, grace, and strength of Kathy Brandt, her wife Kim Acquaviva and their son Greyson.  Kathy has been diagnosed with advanced stage ovarian cancer and according to what they have been told, she will not survive this disease. With her family, she has made the profound decision to forego chemotherapy or other treatment that might prolong her life but drastically diminish the quality of the time she has remaining. With this decision, she is “walking the walk and talking the talk” of everything she has contributed during her career in the hospice and palliative care world. With this decision, she is also gifting us with an example of courage and how we too can face the end of our lives when it is inevitably our turn.

To thank her for this gift and show support during this grace-filled but difficult time, the goal of this GoFundMe campaign is to try to raise as much money as possible to alleviate financial worries during the months ahead. This is precious time for Kathy, Kim and Greyson to focus on being together and building memories – not worrying about money.

We are powerless to make this all better, to take away the sorrow and the suffering, to reverse the randomness of cancer’s horrid reach. But we have the power to give as generously as we can to ensure that Kathy, Kim and Greyson know they are loved and they are not alone as they move into the future.
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An update from Kim

Lately I’ve been thinking a lot about why Kathy and I don’t want hospice despite spending our entire careers advocating for earlier access to hospice care. At first I told myself it was because we didn’t need hospice care to meet Kathy’s needs at home. We know who to ask and what to ask for when it comes to symptom management, and hands-on care (showering, bandage changes, dressing, etc) are intimate acts of love that I enjoy doing for Kathy. I told myself it was because we’re introverts and we have crazy dogs who bark at strangers and we’d rather not be bothered by regulatory-required nurse visits that we don’t need. All of these things are true. But there’s a bigger reason - one that I’m ashamed to admit. I don’t want hospice because I know what good hospice care is supposed to look like and I don’t want to spend these last weeks with Kathy feeling disappointed, frustrated, or enraged by less-than-optimal care. Kathy spent her entire career advocating for exceptional end-of-life care and so have I. Nothing would increase her suffering (or mine) more than getting shitty hospice care. And shitty hospice care is a very real possibility, especially for us as a lesbian couple: Gary Stein’s survey of almost 900 hospice professionals revealed that things are even worse than I had imagined: “Most providers surveyed said LGBT people received discriminatory care, he said. For transgender patients, two-thirds said that was true.” ( https://www.washingtonpost.com/health/for-the-stonewall-generation-turning-to-others-for-care-could-make-them-uniquely-vulnerable/2019/05/31/cd313748-80b1-11e9-933d-7501070ee669_story.html?noredirect=on&utm_term=.64aaa366a32f)

I write this with a heavy heart. I love hospice — if I knew that our family would receive the world’s best hospice care, I’d say “sign us up.” I’m sure I could make some calls and get the very best hospice team assigned to our family. The local hospices here have great reputations and amazing professionals at their helm. A local hospice would send us the most LGBTQ-friendly, dog-loving professionals and we’d get the best care in the world. But if I weren’t me and Kathy weren’t her, would we have the same certainty that we’d get exceptional care? Would we know who to call or what to say or what to ask for so that we’d receive what hospice is truly meant to be? The answers to those questions make me sad. They make Kathy sad. And if you’re a hospice professional, they should make you sad, too. Channel that sadness into action: do whatever you can to ensure that ALL LGBTQ+ people - not just those who know who to call or what to ask for - have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence. There is no room in hospice care for homophobia or transphobia or biphobia. There is no room in hospice care for heterosexism or cissexism. And until those things are eradicated? There is no room in hospice care for my family.
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An update from kb:

I’m ready.

Over the past few days I’ve decided I’m ready to die. That may sound like I’ve given up or want to die. That isn’t the case. I’ll try to describe it.

For me I think the transition started last week. We went to dinner and when we got home, I struggled mightily to get up the 5 steps to our front door. And to do so, I had to pull myself up using the banister, which was painful. I told Kim a few days later that I didn’t think I’d leave the house again.

Then I had another episode of having to drink Magnesium Citrate, reminding me that my bowels are still capable of bringing me down.

My pain is worse. My side hurts all the time and when I cough sometimes it hurts a lot. It’s taking much higher doses of MMJ to keep my pain under control. I want to be awake enough to enjoy time with my family so I know I’m under-treating my pain. I started a new medicine on Friday - olanzapine - that’s helped a lot with my nausea, anxiety, and emotionality. But weird new symptoms keep popping up. The latest one: genital lymphedema. (Kim has decided my drag queen name is “Puffy Pudenda”). Is this TMI? Probably. But I want people to know that dying isn’t like a Lifetime movie. It’s weird and your body betrays you and you’re constantly having to adjust.

Kim gives me a shower now and she does my nightly shots. I use a walker to go from the sofa to the bathroom and I keep a waterproof pad under me all the time because I keep feeling as though I’m going to pee myself but I never do. I’m constantly bracing myself for my body’s betrayals.

The physical issues exist apart from and yet are linked to how I am experiencing my illness. Physically my symptoms can be managed and I can be kept comfortable. Emotionally each of the issues represents my march toward death.

And while I’ve said “I’m ready” in the abstract when talking about my illness and death, now I really am.

I’m not ready to leave Greyson and Kim, and yet I am. I love them with all my heart and already feel some separation between us. I’m the outside observer at times watching them live their lives without me.

My ex-sister-in-law, Terri, and two nieces visited this week,was wonderful. Before they left, Terri gave me the most amazing gift, through her goodbye “prayer”with me. I feel good about our goodbye.

I’ve been lucky enough to collect an odd assortment of friends. I’ve had visitors, calls, and messages from countless friends, from each area of my life. I feel the love and it is so appreciated.

I’m not depressed. My symptoms are managed well. I’m just done being here.

I have no doubt that I could keep going, push to live longer. The question is for whom or why would I do that? Kim and Grey are ok. They’ll be sad no matter I die. You will all be ok when I die. So why linger, why not verbalize that I’m ready to go.

I’m ready.
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An update from Kathy:

Anytime a meeting is cancelled or ends early, someone typically makes a comment about being given “the gift of time.” But can you really give or get time as a gift?

This week I met with the fabulous Dr Leslie Blackhall, Director of UVA’s palliative care program. She did an assessment, we talked about my goals and symptoms, she tweaked a few medications, and she was great.

For the past month or so, Kim and I have been fairly certain I’m going to die around my birthday in mid-July. I’m weaker, I get short of breath easily, I’m coughing more, and I have to take more MMJ pills now to keep the pain under control. I need more assistance with my activities of daily living (ADLs) now, so Kim helps me get dressed and she’s installed a shower chair. Walking up the front stairs of our new home, I have to pull myself up by using the railing. And outings like a trip to the movie theatre require the use of a wheelchair.

I know how I feel these days but I was curious as to Leslie’s “prediction” of how much longer I’d live based on my symptoms. A side note: Kim wondered before the visit why I cared how long Leslie thinks I have left. It’s a valid question. Somehow hearing it from a palliative care physician felt more “official” than our musings. Anyway, Leslie told us she thought I had a few more months.

Months?!!

I was given the gift of time. Wow! Woo hoo!!! I'll have more time with Kim and Greyson and my family and friends. This is great!

And then the reality hit. If I live longer:

• We have to arrange for my caregiving when Kim starts work on August 1st - Grey will be home during August, but depending on my symptoms it may be too much for him for manage alone while Kim’s in the office.
• Grey goes back to college at the end of August - if I’m still alive, that means starting in September I’ll be home with the dogs alone all day unless Kim comes home for lunch.
• How will we afford caregivers or other supports to keep me home while Kim works? I haven’t worked in 5 months and one salary won’t cover my care needs (medical supplies, co-pays, and MMJ) and our bills.
• What TV shows can I binge to fill the time each day? When Kim's working or walking I typically watch TV to pass the time. I’m done with The Blacklist (Thanks, Pauline!), I need ideas!

In addition to the above, it’s a mind-altering experience to be certain you’ll be dead by August and then be told actually you might see September too. I’m happy, but as you can see from my list above, also stressed about what it all means. I’ll take the time, if it really can be given to me, and I’ll revel in it with Kim and Grey. We’ll figure out the logistics, I’m sure. And I’ll keep breathing and living, one day at a time, until I can’t.
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An update from Kim:

I’ve always been a thank you note writer. My mom made me write thank you notes as soon as I could scribble words on paper. Kathy and I passed along the same tradition with Greyson, modifying it slightly because of the hand tics that make it painful for him to write with a pen or pencil. Now that he’s 19, Greyson usually remembers to send Paperless Post thank you notes when he receives gifts.

I don’t think I’ve sent a single thank you note in the 5 months since Kathy’s diagnosis - and I’ve felt guilty about that pretty much every day. Hundreds of people have donated to the GoFundMe or sent us ice cream or made us meals or shipped us cookies or knit Kathy a shawl or done a million other kind and loving things to support our family. And I haven’t written a single thank you note. I couldn’t find words to explain the feelings driving this lapse in manners until this morning.

Every day for the past five months, I’ve felt like I’ve been treading water in the middle of a vast ocean. Rescue helicopters pass overhead daily, dropping cookies and ice cream and water and home-cooked meals directly into my mouth. The helicopter can’t pull me out of the water, though - the seas are too rough. So I keep treading water, flutter-kicking my legs and churning my cupped hands through the choppy water. Periodically the helicopter drops waterproof blank note cards and a pen and I think to myself,   “If I write a thank you note today I’ll have to use both hands and then I’ll drown.” So I keep treading water and feeling guilty about not sending thank you notes. But I know I made the right choice because seriously - who wants a thank you note from someone who had to drown in order to write it?

Thank you for your love and understanding. The absence of a thank you note in your mailbox isn’t rudeness - it’s evidence that our family is still afloat, thanks to your support. ♥️

Hugs,
Kim
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$73,350 of $100,000 goal

Raised by 599 people in 5 months
Created February 13, 2019
Friends of Kathy, Kim and Greyson
on behalf of Kim Acquaviva
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